» Nonfiction

On Love and Duty

Joyce Dehli


“Will you help me?” Michael whispered in my ear as plates of his mother’s rhubarb pie were passed around the table.


Michael had asked my partner Grace and me to join his family’s brunch one late-summer Sunday in 1995. Before others took seats, he’d motioned for us to sit on either side of him. I understood: we were his sentinels. As it turned out, he didn’t need our protection. Michael’s family had gathered for him, but they mostly left him alone. His three brothers ribbed each other incessantly, occasionally enfolding their mother into their banter. They hadn’t seen Michael since his AIDS diagnosis, though they lived only thirty minutes away, near the farm where they’d been boys together. Michael’s two sisters and a few friends cared for him.


Michael was really Grace’s friend. A decade earlier, they’d gotten sober together as part of a tight group of gay and lesbian AA friends. They were all in their early twenties then, except for Michael who was about ten years older. By the time I met Grace a few years later, her circles were widening. Still, her core group stayed tight, and I saw Michael at potlucks and picnics. We talked a little. In their boisterous group, he was the shy one. His hair was summer wheat, his eyes sky blue. I liked his field-worthy jeans and checkered, short-sleeve shirts buttoned over white tees. He reminded me of the farmers on organic cereal boxes, happy amid their grains. He tolerated discos but adored country line dancing. If he could, he would have traded his graphic-design job for tending gardens, hands in soil, and fresh blooms always in the offing. That’s all I knew. Grace was our only link; I had my own friends.


Things changed when Jonathan, the youngest of their sobriety group, died from AIDS. He was the one they’d tried to protect, the dashing and needy one who, in his late teens, had fled his small hometown in northeastern Wisconsin for Madison. Before long, his dreams of a writerly life with worldly men took him to Chicago, but he kept his ties to Grace and Michael. After Jonathan’s death, his parents whisked his body back to the town he’d despised and to a church that prayed he would be forgiven for the life he had lived. His friends drove two hours to his funeral. They did it for Jonathan, though they knew the ceremony would be brutal. I went along. On the ride home, our car overflowed with stories, hilarious and tender, of the man they loved. Michael didn’t talk much. We didn’t know then, but he was already sick. HIV had become AIDS.


One Sunday, not a year later, Michael called our house in a panic. He said his brain wasn’t right; it switched off and on, off and on, froze up and split in pain. Grace and I took him to the emergency room. After hours of tests and waiting, a doctor said he’d had a series of ministrokes called TIAs, or transient ischemic attacks. Blood flow to his brain had sputtered for a spell. AIDS was to blame, the doctor confirmed. He sent Michael home, warning him to expect more attacks.


Michael called us regularly to take him to the ER, usually on weekends. Looking back, I think he was being considerate of our time, knowing we worked long hours during the week. He contained his terrors until they burst on weekends. Most of his other friends—gay men and an ex-boyfriend with whom he still lived—were exhausted by the needs of those dying around them. They were devastated by relentless loss. Some turned away from Michael. Grace loved Michael like an older brother, but she sometimes grew annoyed when he called. Still, she remained steadfast. Unlike Grace, I could keep my distance. I wasn’t bound to Michael in the same way. I sometimes wondered: what is my duty here?


In the decades that followed, I asked myself that question often—when dying friends lingered in illness and when cancer took my dad, slowly and painfully, during the height of the Covid-19 pandemic in 2020. What was my duty, and could I bear it? Could I watch what dying inflicts on a human body? Could I bear the grief that precedes death, gathering into itself like darkness before a storm? Could I bear knowing that whatever care I gave, it couldn’t be enough? And when I wanted to flee, would I stay or turn away?


As Michael’s circle shrank, his anxiety swelled. The sicker he looked, the clearer it became to everyone: this man had AIDS. Nobody took open seats near us in the ER waiting room. If he’d wanted, Michael could have lived most of his life passing as straight. But as he grew gaunt and weak, he was seen as a man with AIDS. And, given that this was the mid-1990s, people assumed he was gay.


He wouldn’t have hidden if he could. When Michael got sober, he committed to being himself in the world. Grace lived that way too, but not me. Although I was generally out, I excelled at managing what people knew about me: more truth for some, less truth for others. I calculated the risks of being out against the pain of hiding. Standing beside Michael, I felt vulnerable to derision. I didn’t always speak up for him.


Once, two white-coated ER residents ridiculed Michael for being scared. As he trembled in a gown on the edge of a hospital bed, they—a woman and a man—stood several feet away, practically shouting their questions: “What year is this?” “Who is the president?” When Michael answered incorrectly, the woman laughed at him. The man accused Michael of seeking attention. Clearly, they wanted Michael to go away. Grace and I were outraged, but we said nothing. Perhaps Grace thought it was better for Michael if we didn’t complain. We didn’t want him to get kicked out. But maybe I also feared their disdain for Michael would extend to me. I’d speak up today, but I knew less of life then.


Michael’s regular doctor said he could stay home as long as he had people caring for him. A few friends set a schedule and divided tasks, until Michael’s ex-boyfriend-turned-landlord kicked him out. He said he couldn’t watch another death. That’s when Michael’s younger sister took him in. She lived alone in a small house nearby and delivered mail in the mornings. His older sister flew in from L.A. and stayed for weeks. Before long, the sisters proposed the family brunch. The family hadn’t gathered in a long time.


By then, Michael looked twice his age of forty-three—all bones, covered by bruised and mottled skin, with wispy patches of hair on his head. If his mother and brothers were shocked to see him, they didn’t show it. The brothers came in with fists jammed in their jean pockets. They didn’t hug Michael or even touch him. All morning, the sisters were up and down from their dining-room chairs, bringing out an egg-bake and plates of cinnamon rolls to the table, filling coffee cups, and clearing leftovers for pie. The brothers talked of the growing season and how farming had changed in the years since their father’s death. Mostly they joked, drawing out their mother’s laughter to the point that she had coughing fits. One of her lungs had been removed for cancer, and now the other had it. The family had known loss and soon would know more.


Michael spoke little and ate less. Now and then, he smiled, though seemingly not about anything in particular. His eyes held one person, then another. Grace jumped into family stories, asked questions, and laughed appreciatively. I could not. I was stunned, then furious that nobody asked Michael about himself. Nobody mentioned his illness. They knew he had AIDS, just as they knew he was gay—another secret that wasn’t a secret. Yet, his brothers barely glanced his way.


I was quick to judge Michael’s brothers as cowards. Quick to assume that what Michael needed from them were words. I was certain Michael needed to hear that his family knew him, loved him, and could bear his illness with him. Now, in the second half of my life, I wonder if I was wrong. Maybe Michael didn’t need words as much as he needed his family’s presence. His brothers came as close as they dared at the Sunday brunch. And he welcomed them, though with Grace and me and his sisters at his side. Michael didn’t speak the words: gay, AIDS, dying. He put aside radical honesty in order to receive his brothers’ love as offered. This was more than Jonathan got, and maybe it was enough for Michael. I don’t know. It wouldn’t be enough for me.


Much is expected of those who love the dying, and those expectations are often enough to scare a person away. But my role with Michael seemed limited and clear. At the brunch, I knew my place: the loyal sentinel, bound not by love but by duty. I fumed, but I kept quiet and refused my slice of pie.


When Michael whispered—“Will you help me?”—I was glad for a reason to leave the table. He clutched his cane and gave me his arm. As we shuffled down the hallway, the table talk faded. I expected he wanted to nap.


“I need to go to the bathroom,” he said.


All of my anger at his brothers turned into fear for me. I didn’t want to be afraid, but I was.


AIDS deaths peaked in the United States that year. Within several months, the FDA would approve antiretroviral drugs that would turn AIDS into a manageable, if chronic, disease for many people. But for Michael, like those before him, the diagnosis was a death sentence. We had brochures from the local AIDS Support Network to guide our caregiving since we didn’t have the Internet then. Touching was okay. We knew AIDS was transmitted through blood and semen, as well as vaginal fluids, but not saliva, sweat, or urine. But what if Michael had a cut, an open wound? He had thin skin and bouts of incontinence. When his sisters cleaned him, they wore gloves. Nobody was completely sure how careful to be. I tended toward caution and focused on doing chores and running errands for Michael, not bodily care. Mostly, he and I talked, often about gardening. Grace did more. I held back not only because I was afraid of AIDS. I was afraid to watch a person die. It was my first time.


I opened the bathroom door, and we squeezed inside. Toothpaste and brushes, soap, rubbing alcohol, and creams crowded a shelf above the sink. I guided Michael to a narrow space between the toilet and the tub.


“I need you to help me,” he said.


“Okay, with what?”


“Everything,” he said. He leaned heavily toward me, exhausted.


Why me? That was my first thought. I heard his brothers’ laughter, those men who had grown up with him and had bodies like his. Why not them? Why not the mother who gave birth to him? His sisters? Even Grace? Why did Michael ask me? How did I get here? 


“Okay, so you just need to pee, right?” I asked.


He nodded. I undid his belt, unzipped his fly, let his pants drop to his ankles, and pulled down his underwear.


“Okay,” I said again. But I knew there was more to do. Michael wasn’t steady, and I didn’t want to get wet. What if there was blood in his urine? I wondered if doctors were absolutely sure urine didn’t transmit HIV. If I got AIDS, Grace would be there for me, but not my family—I felt sure of that then, but I didn’t really know. It would be just Grace and me and, as it was with Michael, a few friends. The thought of dying, as Michael was dying, terrified me.


It’s strange how many thoughts can blaze through a mind in a second or two, leaving—one hopes—no outward sign. I did what I needed to do. I held Michael’s penis, aimed at the bowl, shook off the last few drops, and wiped him.


“Thank you,” he said.


The brunch ended soon afterward, and I don’t think his mother or brothers saw him again until his funeral several weeks later. In the weeks between, AIDS-related dementia took over Michael’s mind, slowly at first, then swiftly. When Grace and I came for our shifts during the week, or just to say hello, Michael was always in bed. He’d lost language and could no longer speak with words. But I felt sure we communicated even toward the end.


One rainy day, Grace and I found Michael agitated, rustling on his bed with gym shorts over his diapers. He was as small as a skinny boy, his body was withered and worn.


It was Grace’s idea to put something on the turntable. She thumbed through the dozen or so albums on a shelf, pulled one out, and dropped the needle. She nodded at me and smiled at Michael.


“If I should stay …”  


Michael stopped moving. Grace turned up the volume until Whitney Houston’s voice swelled through the room, through the whole damn house. Grace and I sang along to Michael: “And I will always love you / I will always love you…”


Ardent and loud, we kept singing. I fumbled the lyrics until we returned to the chorus, then I belted it, and Grace did too. “I will always love you.” We twirled at the foot of Michael’s bed. We drew our hands to our hearts, then threw our arms out to him. He flung his arms toward us with glee. His eyes shone. His smile was radiant. His sounds merged with our song. We hugged him, enfolding him, all the while singing. We were happy. I believe we were all happy in that moment.


Grace had to return to work, but I stayed a little longer. I sat on the bed beside Michael, who was half-raised against pillows. I reached for his hand, surprised to feel content. Michael curled onto his side and nudged his head onto my thigh, where he fell asleep.


I wondered then, as I still do, why Michael let me near in his dying days. It’s true that he needed help and I was there. Still, he kept plenty of people out. Maybe his trust in Grace extended to me. Maybe he’d decided I was basically kind. And with me, the stakes weren’t so high. Not like they were with the people he loved, the people he wasn’t sure would come, would stay. It’s the closest ones who have the power to hurt you most. He knew that, and maybe that was reason enough.


I gave Michael so little, and sometimes not enough. At times, he asked more of me than I thought I could bear. That was a gift, but one I didn’t appreciate until years later when friends and my father were dying. Every time, I felt afraid. Every time, a voice told me to run. Still, I showed up. I stayed. I made mistakes. Too often, I said the wrong thing. By the time my father died, I knew that while words matter, you can’t say everything at the end. You don’t have to.


I went to my friends and my father out of love. But love wasn’t what drew me to Michael, and love wasn’t why I stayed through his illness. He might have been at the edge of my circle, but he was there. I went to him as I go to my garden: duty-bound to tend what is in my backyard. That’s how I imagine Michael tended his garden, from shoots through blooms through winter beds at rest. Maybe that is what he and I were doing from the start—tending each other—from those early talks at parties, through the days of his illness, to the end when silence replaced words. I think that’s right. I wonder if Michael knew how much I grew, tended by him.


Sometimes love follows duty. And, as every gardener knows, tending offers its own rewards: the rhythmic turning of soil, pressing seeds, pulling weeds. You pray for sun one day and rain the next, as if you had a say in what lives and what dies.


Joyce Dehli

Joyce Dehli, a former journalist living in Washington, D.C., began work on a series of linked personal essays during a fellowship-in-residence at Harvard University’s Center for Ethics. Her essay, “I Think You Need New Friends,” is a Notable Essay in Best American Essays 2023. She won the New Letters 2022 Conger Beasley Jr. Award for Nonfiction for “On Emptiness.” Other recent essays appear in Alaska Quarterly Review and Hunger Mountain.